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A troubled life, a difficult death

November 2012 Vol.7 No. 11

Author: Stephanie Barker, BSN, RN

Editor’s note: National Homelessness Awareness Week is November 10-18.

Like many of our homeless patients, “Sarah” was a bundle of contradictions. She came from money, got a good education, and worked as a college administrator before her addiction took over and her life spiralled out of control. She could be foul-mouthed and nasty one minute, eloquent and kind the next. She was well-dressed, with beautiful thick blonde hair, but her face had the pale, sunken look of an addict.

Sarah came to the Barbara McInnis House, the medical respite-care facility of the Boston Health Care for the Homeless Program (BHCHP), suffering from end-stage renal disease. The McInnis House cares for patients too ill to live on the streets or in a shelter but not necessarily sick enough to qualify for an inpatient hospital stay.

Yet Sarah hadn’t come for treatment in the traditional sense; she had come to die at our facility—with as little suffering as possible, she hoped. She felt safe with us, had built trusting relationships with many staff members, and wished to spend her last days with us.

I imagine that even for a veteran nurse, the death of a patient is never easy. But for a less experienced nurse like me, only a couple of years out of nursing school, Sarah’s death was particularly troubling. Caring for her was one of my first experiences with end-of-life care, and several things made her case particularly painful for me and her other caregivers.

First, more of her back story: Dialysis had been a disaster for Sarah. Her addiction had made it impossible for her to be shackled to a machine three times a week for hours and hours. She’d had many experiences with drug detox and treatment programs for her addiction, but in the end she kept using. Eventually, she refused addiction treatment. Her failure to show up for dialysis regularly had been a source of frustration for many of her caregivers. So when a perceptive BHCHP internist finally explained the consequences of foregoing treatment and then asked Sarah for the first time what she wanted, she confessed she found dialysis too difficult. Although I respected her decision, it was hard to watch her die from a disease that could have been treated.

By the time Sarah was admitted to the McInnis House, she was already quite ill and the staff thought the end was imminent. Death, however, had other ideas: She lived another 5 weeks. As time went on, her suffering grew and she became increasingly agitated. Because of her high tolerance for narcotics, keeping her comfortable proved challenging. She would try to crawl out of bed, had periods of delirium followed by extreme lucidity, and was putting out a disconcertingly large amount of urine, given that her kidneys were shutting down fast. I had moments of doubt, questioning whether the path we were on with her was the right one. I knew I was working as hard as I could to provide good care, treating her with respect and trying to relieve her anxiety and pain. But it was hard to watch her die in such a drawn-out way.

Because so many of our patients come to us with precious few intact family relationships, we often function as a surrogate family, expecially with our most gravely ill patients. Her other caregivers and I developed an intimacy with her that sometimes made us unable to leave our work at work. When a few members of Sarah’s family visited her and expressed misgivings about her treatment, it was hard for us not to feel some resentment. Yet intellectually, we realized how difficult it can be to have a relationship with someone who had burned bridges long ago.

The intimacy that developed between Sarah and the staff was especially clear at the end. The room of a dying patient in a hospital is as empty of caregivers as it is filled with family members. Not so at the McInnis House. In her last weeks, many caregivers held vigil at her bedside, ensuring that she didn’t die alone. Sarah was scared of dying. She was afraid of what it would feel like to cross from life to death. When she confided this to me, I told her that her caregivers cared deeply about her, were there to support her, and would do whatever we could to keep her comfortable. My one regret: I didn’t say something that might have addressed the spiritual discomfort I suspect she was feeling, in addition to the physical. What I could have said only occurred to me later: “It’s OK. you can let go. You don’t need to hold on any longer. It’s going to be OK.”

Stephanie Barker is a nurse at the Boston Health Care for the Homeless Program in Boston, Massachusetts.